posted
I'm not getting better and everything I try doesn't go the way people expect. Just wondering if anyone found out that something else was wrong other than lyme--like something completely different. Sometimes I think I have a yet-to-be identified illness. I'm at an impasse and don't know what to do.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
How long have you been treating ? This is a marathon, not a sprint. Are you seeing a good LLMD?
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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posted
Been treating for 3 years. Been through 3 LLMDs. Altternative treatment. Rife. I'm WELL aware of the patience factor.
It's that everyone seems surprised that I don't respond like any other lyme patient they've seen. And I don't experience things the way people say things will unfold.
Like, people say herxing is like peeling an onion. Well, I don't peel away. I go back and forth--on for 6 months and then off for 6 months and back again. And I can't tell the difference between herx and just being sick no matter how many times it's explained to me.
I have the distinct feeling I'm barking up the wrong tree even though there doesn't appear to be any other possibility.
So, I'm just wondering, if it's possible that there's a mystery illness out there that others feel they're experiencing.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Yes, I don't think it's always Lyme. The tests are not accurate & the symptoms are vague. It can be a number of different things... not just Lyme.
After a point, you have to try something different if the Lyme treatment is not working.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
have you been tested for Brucellosis?/
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
It is such a complex illness. Heavy metal toxicity and mold are some things to consider as well as looking into your body's ability to get rid of toxins. Others that know more about this will chime in with more technical information on these things.
I have often wondered the same thing because my symptoms seemed to worsen when I started the ABX and I have never really gotten back to my baseline before treatment. I have received clinical DX of Lyme from 3 LLMD's (1 is NP).
What confirmed it for me was a brain spect scan that showed abnormalities consistent with Lyme. Also one of my blood tests eventually showed 2 co-infections. That made me feel more confident that I must have Lyme.
What were your symptoms before treatment? And what are your symptoms now? Has there been any small improvement?
Posts: 2387 | From New England | Registered: Aug 2011
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Get the Advanced Lab culture. That may help you have peace of mind about whether lyme is involved.
I am assuming you have been checked for other tickborne infections too?
Timaca always recommends getting checked for viruses in a situation like this. Do a search and you will probably find her posts on this subject.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
I've been checked for everything the docs have tests to test for, except spect. Maybe I'm having the spring time flare. Maybe I just can't cope with the toxins anymore despite trying to detox. I feel like I'm gonna have renal failure my back and torso hurt so much. I've been trying to self-treat and I guess, I'm failing. But so did the doctors, my way I save a lot of $ for the same result.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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Just a thought, and I bet you have already been checked, but I know a woman that was in remission from Lyme, thought she relapsed and it turned out it was Chlamydia pneumoniae. I have not talked with her since that time but her Lyme doc had to aggressively treat this .... She had nearly been bed bound with Lyme and was terrified. I remember her telling me the symptoms were very similar and that the treatment was helping her for the Chl. Pneu. SO, it is not always Lyme for sure...
And with the Fry bug... Gosh, they just figured that out... or so I understand... what else haven't the figured out... Hang in there... it is a marathon... I am so sorry you are feeling so bad. With the potential for renal failure you mention, do you think you ought to get checked out.... I know my doc left no stone unturned. I didn't want to know everything that he tested me for... but I went to him for his expertise. Sorry if you have already done all of this... Thinking of you...
Posts: 859 | From Southeast | Registered: Mar 2011
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posted
willbeatthis, nice, thank you. what is the Fry bug? Something found at Fry labs?
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
We have never tested positive for Lyme. I'm only here because the symptoms are so similar and the thought that Lyme COULD'VE been in the mix somewhere.
We were positive for a lot of things that most of the people have.
Just not Lyme.
Posts: 2903 | From AZ | Registered: Feb 2006
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
no everyone i know it was definitely lyme. and not fibro...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I believe it's something else than Lyme that ails me.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Someone told me mold toxins keep people with lyme from getting better, that a product called Cholestepure might help. I'm gonna try it.
I'm sorry all my fellow sufferers. Man does this suck.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
re: I've been trying to self-treat and I guess, I'm failing. But so did the doctors, my way I save a lot of $ for the same result.
---
Yes, I know what you mean. I think to myself, "Why keep wasting money on doctors & tests. They didn't do much better than I'm doing on my own - except drain my bank account."
If you do have mold exposure - you have to get out of the place where it's coming from for the treatment to work - as far as I know.
I like this message board even though I might not have Lyme. Lyme comes with alot of extra baggage - people here are quite knowledgable. Everyone wants to get well.
Takr care.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Also, if you can: Try to call this number and listen to Dr. K-- it is chock full of info for any of us with chronic disease... all I can say is wow and I have things to do...
Per GiGi:
Dial 530-881-1399 access code 558497
About things you have heard before and things you haven't. Thanks GiGi...
Posts: 859 | From Southeast | Registered: Mar 2011
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posted
sparkle, I think it's better to live with mild mold than to live on the street.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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posted
^
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
What are your most bothersome symptoms? I know for me it was the severe unrelenting muscle pain in my hips. Initially I assumed it was my hip joints but upon seeing a PT she determined that all my muscles were extremely tight and that was contributing to the pain. I really was not seeing much of a result with the abx that I am on as well as the lidoderm patches and neurontin. People here suggested incereasing my magnesium and its only been 2 days and I see a big difference.
Posts: 1750 | From United States | Registered: Dec 2011
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Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions - that can hold us back are discussed here.
TIMACA's links are here. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I get the same type that Dr. Burrascano recommends in his guidelines. I got it at Amazon.com but could not find it at Walmart as he suggested. I will copy and paste below...
6. MAGNESIUM (required) Magnesium supplementation is very helpful for the tremors, twitches, cramps, muscle soreness, heart skips and weakness. It may also help in energy level and cognition.
The best source is magnesium L-lactate dehydrate (�Mag-tab SR�, sold by Niche Pharmaceuticals: 1-800-677-0355, and available at Wal-Mart). DO NOT rely on �cal-mag�, calcium plus magnesium combination tablets, as they are not well absorbed.
Take at least one tablet twice daily. Higher doses increase the benefit and should be tried, but may cause diarrhea. In some cases, intramuscular or intravenous doses may be necessary.
Posts: 2387 | From New England | Registered: Aug 2011
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posted
I am having the same thoughts....do I really have Lyme/Bartonella. I was treated successfully 4 years ago and then went backwards.
Now my symptoms are definately more neurological and I am in treatment for Bartonella. I still am not sure what is wrong with me. Were the abx successful or was I going to have a remission anyway.
I have been through a couple Lyme doctors as well and they never came out and said I had Lyme but did agressive treatment anyway.
I still suffer from mental exhaustion...neuropathy pain..sleep disturbance/unrefreshing sleep...chronic tiredness. I can do just about anything physical but my brain gets overloaded and feels like it is going to explode.
I am still searching for answers even though I have been tested for everyhing imaginable. So yes...I still don't know for sure. It could be something else that is causing these symptoms..
Posts: 343 | From North Carolina | Registered: Oct 2008
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Kim, one of the things that validated my diagnosis of Lyme was a brain spect scan that showed hypo-perfusion (lack of blood flow in the brain) consistent with Lyme Disease. This should change over time with ABX treatment if it is truly Lyme Disease.
This indicates that Lyme D. has invaded your nervous system and is likely responsible for neuro symptoms, which includes psychiatric. I would not be surprised if the results of your scan would show this condition based on what you are reporting.
Another thing that helped to confirm that I have Lyme is that my new LLNP ordered a blood test from Quest (not Igenex, which originally confirmed Lyme with positive PCR but only 1 band positive). The Quest results showed that I had 2 co-infections that IGenex had not shown. But it was a few months after my initial test with Igenex.
I know that IGenex is well respected among the Lyme community, but the fact that a lab that most MD's and insurance companies validate found co-infections makes me more confident that I have Lyme.
I totally understand your apprehension. I have had the same for quite a while until these most recent tests. I hope this helps. It is such a mysterious and perplexing illness.
Posts: 2387 | From New England | Registered: Aug 2011
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posted
For those whom Lyme treatments aren't working, I would look into upper cervical chiropractic care.
Before I found out I had Lyme I was very into these treatments and heard many success stories about people who had near miraculous recoveries from many different conditions, including fibromyalgia.
It is based on the principle that once you align the body through the spine, you open up the pathways for the body to heal itself.
Through my Lyme treatments I continue to visit my upper cervical chiropractor and make sure my spine is in alignment to allow maximum possible healing.
The techniques are extremely gentle and there are no side effects. There really is nothing to lose.
Posts: 84 | From St. Louis, MO | Registered: Feb 2010
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posted
For those whom Lyme treatments aren't working, I would look into upper cervical chiropractic care.
Before I found out I had Lyme I was very into these treatments and heard many success stories about people who had near miraculous recoveries from many different conditions, including fibromyalgia.
It is based on the principle that once you align the body through the spine, you open up the pathways for the body to heal itself.
Through my Lyme treatments I continue to visit my upper cervical chiropractor and make sure my spine is in alignment to allow maximum possible healing.
The techniques are extremely gentle and there are no side effects. There really is nothing to lose.
Posts: 84 | From St. Louis, MO | Registered: Feb 2010
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
The type of Mag I use is the one listed above in another post, recommended by Dr B, Mag SR. I started out on just one every twelve hours, but it was not enough. I am now taking 2 every twelve hours. Definitely improved in alot of areas, but may need to increase it further. The great thing about this type is it is slowly released so you hang onto some magnesium throughout the day and evening. With the other types your body will hold onto some, but you will end up peeing out the rest. Also with this type there are fewer side effects due to the SR. CVS ordered it for me. It was $25 for 100, but with my extra care bucks, it cost me $12
Posts: 1750 | From United States | Registered: Dec 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I have recently wondered ( it has been a VERY difficult time)
if my daughter just might be bi-polar. Not kidding.
I KNOW my is Lyme and Bartonella.
But she and I present very, very differently.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
I took MagTab SR for over 2 years. I didn't feel like it did a thing. I just switched to magnesium chloride--seems more helpful--as recommended in one of Rosner's books.
I'm headed back to an LLMD soon so I can have this conversation there. I never had a spect--MRI, but no spect. And getting coinfection tests through QUest is a god idea. My Igenex for babs and bart but my 1st LLMD clinically diagnosed me with both.
surprise, why couldn't bipolar disorder be caused by lyme and co? It causes everything else.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I think the biggest obstacle to recovery is that it's not ONLY Lyme for anyone. By the time someone gets so chronically ill, there are many aspects to address.
And I think something as simple as movement/exercise is easily overlooked and I don't think we can get better without it. Or stay well without it. (And I don't mean to move beyond what you're capable of).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Sickpuppy how much of the Mag SR were you taking? My LLMD only had me on 1 every 12 hrs, I did not see any change at all in my symptoms. Since going up to 4 a day can''t believe how much better I feel, not only with the muscle pain, but so much more energy.
Posts: 1750 | From United States | Registered: Dec 2011
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posted
Ellen101, in the beginning I took a lot, like 4-5 a day. When it didn't seem to do much I cut back to 2-3 a day. So I don't share your experience with MagTab.
Six, I move a lot--for a lymie--but maybe I need to add Pilates into the mix.
I started taking liquid trace minerals yesterday and my depression lifted almost immediately. It seemed to help my foot pain a little too and a boost in energy. It's almost a semi-euphoric feeling, which is a little scary sometimes. I think I should not take it after 6pm cuz it seemed to keep me up last night.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Ellen, glad to hear you are feeling better by increasing your magnesium.
Posts: 9931 | From Maryland | Registered: Dec 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
re: sparkle, I think it's better to live with mild mold than to live on the street.
---
Yes, I know what you mean. None of this stuff is easy.
Eventually, we have to do something. I'm living in a place that I think has alot of EMFs. I wish I could move but I can't right now. I was feeling pretty good when I got here but I've gotten alot worse over the past few months. It could be alot of things, though - not just EMFs.
It's not easy. If you go to an LLMD - they are going to wnat to find Lyme or co-infections - just like if you go to surgeon, they want to cut.
Not everything is Lyme. Some can be but the symptoms of Lyme & company overlap with alot of other illnesses. I know - it's tricky. I know alot of people who have taken the abx & they are fine. So, it must be something else that is making some of us so ill.
Good luck!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
What are liquid trace minerals? I haven't heard of them before.
Posts: 2387 | From New England | Registered: Aug 2011
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I hate waiting to get to the LLMD. But I also don't want to get my hopes up. It's like bleeding out on the floor waiting in the ER. Waiting and waiting.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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